Clothed in Scarlet

Wednesday, August 28, 2013

...but I wanted to let anybody still looking for posts on this blog to go check out a group blog that I started with two dear friends:

everythingtosomeone.com

We will be tackling issues of mothering in today's world, and occasionally throw up more personal posts. While the posts are not picture-centric, there are a few new pictures of the kids there. Today, my post was on homeschooling. I will try to occasionally throw up pictures here still, but it will probably only be as frequent as it was last year--sorry!!

Wednesday, April 17, 2013

Hope turned 2 on Sunday. Between church and nap and small group, we actually had a really full day, and ended up squeezing in present opening in the 1/2 hour before small group. She loves books, although she likes the idea more than the actual reading. She's good at flipping pages.

She also got some trains, and some animals to add to our animal collection. Carver enjoys putting the train track together for her, but her favorite part is pushing the choo-choos on the floor.

We took cake and candles to small group, and let everybody sing to her. She was completely baffled by the candles.

Fortunately, she has older sisters who are happy to finish the job!

She continues to plug away at milestones, making steady progress, though a couple months behind her peers. She has started talking a little bit, and has about 10 words that she can say umprompted, and a huge list of words that she will try to say if you ask her to. She is even putting two words together sometimes, like, "Mama, nana," asking for a banana. She is also doing a few key signs more dependably, and can communicate when she needs a drink or more of something. We are greatly encouraged by her progress in this area.

She is a proficient crawler now, and does a lot of knee-walking, so much so that her little knees are always red. Her real walking is still assisted and very unsteady, and it seems to us that her ability to balance is one of the biggest factors here. She tips and falls easily, even just standing and holding on to somebody, if she turns her head too quickly, she will likely fall over. She does have little braces on her ankles now, just to keep all her loose ankle muscles and tendons in line as she strengthens all those muscles for walking. While I do think they have helped, they have not made the huge difference that maybe we were hoping for. David and I are hopeful that she will walk by herself someday, but recognize that it will be a long haul to get there. I was able to obtain a temporary handicapped parking permit, which will make parking our big Suburban in New Jersey suburbia a little easier :)

Hope continues to get all sorts of therapy every week through NJ's early intervention program. That will be ending here in a few weeks, since we will be off to spend the summer in Montana, and will have to discontinue the therapy for that time. While she would still be eligible when we return until her 3rd birthday, I'm not sure we will continue with it. It is a lot of hours in the week for me, and I'm not 100% convinced that it has made a huge difference for her. She seems to do things when she's good and ready to, and not a minute before, no matter how much pushing and prodding the therapists do. She no longer needs to be followed by our neurosurgeon, and is pretty much out of the danger window for hydrocephalus. We know the signs like the back of our hand, though, and can always take action if we see any of those. She continues to be followed by a neurologist (although we don't go as often as they want us to :), a physiatrist (a new word for me, but he is by far our most helpful doctor), and an ophthalmologist.

As we prepare for the birth of her baby brother this summer, we are realizing that there are changes ahead for her, some already happening now (I can't pick her up as easily as I could a few months ago!). We pray that being pushed into big-sisterhood will help her continue to develop and not remain the helpless baby of the family

David and I are completely dumbfounded by her progress. God has been so faithful to us, when we in no way deserved it. As I have ached in the past two years with friends and acquaintances who have lost babies or have children with more severe handicaps, I do sometimes wonder why God spared us one of those tragedies. But, in His providence, He did, and our job continues to be to care for, protect, nurture, and train Hope so that she will bring Him glory.

Thursday, February 14, 2013

We really love the city. There is so much to see. At first, it was very intimidating for me. But I've found, as we explore it in small sections, that I'm really enjoying a lot of the different areas (although, we don't go hang out in Harlem.)

We have figured out that if you want to look more like natives, throw the kids' razors in the back of the car before leaving, and your kids will blend in like pros. They have ridden their razors down Wall Street and around the statue of G. Washington at Federal Hall. We blended in so well that David was asked directions for the nearest subway.

I mean, I can't really take pictures like this in my backyard. On the other hand, I don't feel a compulsive need to wash my hands after playing in the back yard, either.

Monday, December 10, 2012

Some of you may know that I got a sweet find at a garage sale this fall: a brand new, still-in-packaging DeLonghi deep fryer. The original sticker said $20, the sticker below it said $10, so I offered $5, and she looked relieved to have it gone. Between morning sickness and the initial fear of using a deep fryer, it has been sitting in our basement for over a month now. No longer!

We broke in our fryer with donuts. And they were yummy. I made a very simple recipe that I won't post the link for. The measurements are all in ounces, which is very annoying, and I ended up changing it pretty drastically by the end. But it still worked.

The dough was rolled into small balls, then fried for 2-3 minutes. Just as in the description in Farmer Boy, the donuts really do flip over when one side is done cooking. Watching them sizzle was really cool. The amazing part was that they came out of the fryer almost dry. There was no big grease stain on the towel after we let them sit. I don't know why that is, but it sure doesn't speak well for McDonald's fries.

We rolled half of them in cinnamon/sugar mixture, and I attempted to glaze the other half. I need a little more practice in donut glazing, but I'm sure the kids won't mind.

They tasted amazing. They were not Krispy Kreme's, they were much more home-made tasting, and it was an improvement. They had a weight to them that made you not want to inhale the entire plate, which seems like a pro rather than a con. But they weren't heavy-gross, either (which is how I generally view cake donuts, though others in my house disagree.) That said, the plate was gone in about 2 minutes, and the kids begged for more.

After a maiden run, I think that was $5 well spent! Next on the list: coconut shrimp, chocolate glazed donuts, and cannoli!

Tuesday, October 16, 2012

Hope had her 18 month half-birthday on Sunday. I know it's been a while since I've given you an update, so I took some pictures of her during one of her sessions with a therapist today to give you an update with.

Hope is doing very well. She is continuing to make forward progress, although it's slow. She learned to crawl this summer, right around 15 months. Because her muscles are so low-tone, the quality of her crawling is not great. Her legs do the splits more than the should, and she has a hard time lifting her head while crawling to see where she's going. That said, she is a master of figuring out shortcuts for these problems. She will crawl a little ways, then sit up so that she can remember what she was aiming for, go back down on all fours and keep going. She has also mastered this funny little swim-with-her-legs move, which the physical therapist hates. It involves putting her legs in directions they should not be able to go, and pushing with them, so that she really looks like she's swimming with her legs. It's hilarious, unless you're a therapist. Then it's alarming.

She can now pull up on furniture, and is working on her balance on her feet. We are hoping that she walks sooner rather than later, as that will put an end to her swim-crawl, which really is not good for her ligaments and joints. She has not needed any intervention other than therapy to this point to help her mobility. She wears these funny constricting pants (or she's supposed to, but mom is sometimes lax in enforcement) that help keep her legs in the right position while crawling and climbing. In the coming months, though, it looks like she will need little ankle and lower-leg braces to help her walk. Her muscles are just so loose that her ankles kind of fold over on themselves. A brace will help build those muscles up correctly, so that hopefully she would not need braces forever.

Cognitively, she is also doing well. Her receptive language (meaning her ability to understand and respond to us) is very good, almost up to her age-level. She can obey commands, and understand a lot of what she says. Her communication back, though, it severely delayed. It is actually her area of biggest delay, and it has kind of snuck up on us the last few months. We have been so focused on her gross motor skills, that nobody was too concerned about her speech. Now, we're concerned. She does not make any sounds other than grunting. She grunts with a lot of inflection, though, and is able to make her desires known. Our attempts at teaching her signs have been unsuccessful, as well. She was recently evaluated by a speech therapist, and that hour was very informative for me. The part of her brain that's damaged is her cerebellum, and one of the things that is affected is her ability to plan. With gross motor, this means that her brain can't really figure out all the steps needed to crawl--she's had to be taught them and her brain trained to know what's supposed to happen. We think this is what's happening with her speech. She understands us, her hearing is fine, and she can move her mouth and make noise, but somewhere, all the steps to make the sounds come out in the right order, with her breath behind them, at the right time, got lost. It's called a motor-planning deficit, and that explanation really fits with the way she communicates (or doesn't), along with the other problems she's had. In addition, because her motor skills are poor, it will be hard for her to learn to sign. She one sign she has consistently is "bye", where she will wave. We will probably continue to do some signing just as another way for her to understand us (both visual and aural), but don't really expect that she will be able to sign back. All that to say--we will be starting weekly speech therapy in the next few weeks. The therapist will work with her facial muscles and the motor planning to try to get her to speak, and will work with us to figure out alternative means of communication. In addition, when she does learn to speak a little more, there is a high probability that her speech will be a little slurred, simply because her muscles overall are so low-tone.

So that's the quick version. I feel like that is really a lot of bad news, though, and the reality of life with her is that we are all still completely enamored with her. She so stinkin' cute, and she does the funniest things. She will squawk at Rose for taking a toy or getting too close to her personal space. She'll give kisses. She'll wave bye-bye when she wants to be done eating. She plays peek-a-boo. She greets Dad when he walks in the door. When she wakes up in the morning, she spends a few minutes in bed with me, looking at a book. Then Ellie will come in and get her to go play in the school room. Ellie will pick her up, and wait for Hope to pull the door open so they can leave my room. Hope will wave to me as she goes.

We continue to be so thankful for her life. We will face the challenges in the upcoming months with her, and look for solutions, all the time knowing that she is a gift from God to us, in ways we can see now, and in ways we may only know in heaven.

Well, I've got a "Hope is 18 months" post for you, but first I'm going to subject you to other pictures I found when clearing off my flash card today.

As some of you know, we traveled a lot this summer. David and I went to Israel, by ourselves, for 10 days. Someday I might get around to putting up pictures from that amazing trip. 2 days after getting home, we started off on a whole-family adventure across the United States. We went first to Indiana, then to Montana, via Michigan, Missouri and Colorado (I know--they're not even close to each other). We spent 3 1/2 weeks at the cabin in Montana, and then returned to New Jersey via Indiana and Michigan. Along the way, my amazing husband defended his dissertation, earning the title "Dr." Pretty awesome.

Needless to say, while at the cabin, we spent a lot of time in the lake.

We also did some al fresco art on the deck. This was one of my favorite activities. We would go and find pinecones and other objects and bring them back and draw them. So cool.

Hope gained a lot of mobility at the cabin. She started crawling, and while she was not pulling up herself, she could hang on if you put her somewhere. She loved watching the kids from the deck. They'd jump in the water and yell her name, and she'd yell back at them.

The big kids all took turns tubing. After Carver, Laura was by far the most adventurous, until she got bounced around a little too much. After that, it was only slow for her.

Home sweet home.

And Carver caught his first fish! Montana is nobody's fool, and if you're not a resident, they charge you an arm and a leg for a fishing license. That was, by far, the most gourmet fish we'd ever eaten. Too bad Carver thought it was gross.